A day in the life of a single mom raising a teenager and a child with autism. I believe that it's not what we receive, but what we give away that defines us. I want to give away all that I have learned and experienced in hopes that it will help families raising a child with autism or any disability. This is my candid journal where I open up my world and share my joys, knowledge, lessons, disappointments, challenges, frustrations, fears and successes - one day at a time.

Monday, October 22, 2007

Why is Nicky always moving? Self what? Perseverative???

Today was fabulously uneventful! Nicky was able to keep it together and we just enjoyed each other.

This day is so appreciated because it followed a weekend of "overstimulated" Nicky time filled with self stimulatory and uncontrollable perseverative behaviors. When Nicky is badly "overstimulated" he can't do anything without a melt down. It's incredible stressful. To give you a little context, for me it's like having to sit in a room and listen to nails on a chalk board - while I'm at Chuckie Cheese on a Saturday, while waiting to hear if I am going to have a job on Monday. These things have actually never happened all at once, but if they did they would feel much like last weekend. For those of you who don't know what "self stimulatory" and "perseverative behaviors" are let me try and explain (at least in Nicky terms).

Self Stimulatory behaviors....hum, where to start. First, our kids often have some over and under sensitivities to their senses and many Self Stimulatory behaviors come out of this deficit in body regulation. If you imagine these senses like a volume knob, they could be adjusted from silent to loud, or a pain meter, no feeling to excruciating. Sight, sound, smell, vision and touch can range off the normal setting for our kids. Now, imagine that your nervous system didn't send the right messages to the brain that let you know, when your body is sitting - you can be still - your bottom in on something - your are sitting and you should be still. Another example is you are standing, which means your feet are on the ground, you know where your body is and what it is doing, so you stand still in the knowledge that you can. Nicky and many kids with ASD often do now know where there bodies are in space and time so they seek out different movements that are self stimulation- which keeps them tuned in.

These movements range from spinning, swinging, running, jumping, watching things spin, rewinding video's, doing puzzles, staring at their moving hands just 2 inches from their eyes, deep pressure and the classic head banging. So when their system is not clear on what the body is doing and what it should be doing they seek out these "self stimulatory" behaviors, which gives them input. The input can range from Auditory (rewinding a story or song in the tape recorder over and over) For example when Nicky jumps he knows where is body is because of all the deep pressure he is getting up through his feet into his ankles, into his hips and he's connected - again this is how he gets tuned in to his normal setting.

So, kids like Nicky seek pressure for organization. Nicky has a range of "self stimulatory" behaviors and it seems to me that when he grows out of one, he replaces it with another. Right now some of the things he does to keep him connected or stimulated are spinning, swinging, jumping, making verbal noises, staring at his hands, watching video's, sometimes it is doing puzzles over and over again. All strategies to keep him connected somewhere. He has learned to create strategies that work for him, for example he loves to watch video's, and he loves to rewind videos and when he does this his nervous system gets so overstimulated that he has a total system overload resulting in a meltdown. So when he watches video's he often takes puzzles because he uses doing the puzzle to distract him just enough from the video to keep his body calm to reduce the likelihood of becoming so overstimulated that he has a meltdown. So he sits and franticly does puzzles while watching a video to keep him from bursting so he can continue to watch without a meltdown. What's a meltdown? For Nicky he might begin to scream or cry, throw something, run from one to to another to find someone to hit or pinch, kick, bit and be for the most part inconsolable - this can last for up to 3 minutes to 20 minutes - and not capable to calming himself. These episodes usually end with a tearful child saying "What Happened". When he is in an extended state of "over stimulation" just asking him to come and get a drink can set off a meltdown.

The best description I have hear about our kids and the messages in their bodies was this "Imagine you are at a lecture/Concert/Movie any place where you need to pay attention to what's happening. Now imagine that you desperately have to go to to the bathroom, I mean you really really have to go. Now ask yourself, how well could you pay attention to what's happening when your body is screaming GO TO THE BATHROOM...NOW. Well no matter how much you want to pay attention, your internal message continues to bring your attention back to the need at hand, your body. Well out kids are like that all the time!

Perseverative behaviors - this one is just like it sounds. It's something that our kids do over and over and over and over and over and they don't want to stop and they get so over stimulated that they become, you guessed it overstimulated.

Nicky used to perseverate on the Alphabet, now it's video's, books and the flamingos and swans at the zoo. When from the time he was 2 until he was 6 he would become so excited to see the alphabet up on the walls in the classroom he could think about nothing else. Then he began to say A is for Apple, A is for Adult and on and on through the entire alphabet. So we had to take the alphabet down in some of his classrooms so he could get some work done! Now he perseverants on videos and he has memorized hundreds of them and he wants to write lists of them, and he wants to search the internet for them. Another good word for perseverative could be obsession...Nicky becomes obsessed with things and he can't stop thinking about them. Here's a twist, the things that are "Self Stimulatory" which used in moderation can be good, because they can help him get organized, with him can at some point cross a line and turn into things he perseverates on...so you really have to watch the behaviors and keep track of when this shift is beginning to occur.

Oh, the computer is our best friend and our biggest enemy for these behaviors. The internet helped Nicky learn to type and spell because he was very motivated to type the names of what he loves (like Nick Jr.) into the Google Search and find everything he could about Elmo, Cookie Monster, Nick Jr. or Animal Soundtracks...whatever the love of the moment. All that is great, however he is obsessed about getting to the computers, and he seems to memorize everything he reads. Then you look at him and you can actually see that his is not paying attention to any of use in this life plain, rather he is inside himself happily playing back the memorized images and words like his own private movie.